Questions about Tarlov Cysts
 

Recently I had a MRI and It revealed a Prominent Tarlov cyst anterior at L-5 S-1...I have read many reports stating this was very uncommon for one to be located in that area.My question is will this cause sciata in my right and left leg.Also is this disableing.
Thanks
Runninghorse

Tarlov Cyst
 

Runninghorse:

I can tell you this, I have a tarlov cyst on my S-1 joint which is right on the tailbone. I do not know how large it is. I have had constant burning through bottom, legs & feet. This has been going on since 11/07. I've been to a Neurosurgeon & Neurologist for testing/MRI's. They cannot find the cause. The Neurosurgeon says it's not the cyst causing the burning. ???? It's been very frustrating.

I am still in the early stages of doing my own research. Sounds like many are since the Drs. cannot find the cause(s).

Annette

MRI confirmed Tarlov
 

I just found out yesterday that I have Tarlov cysts. I had been having severe discomfort on my left side for quite awhile, and then just about 6 weeks ago it started on my right side. I thought it was just from spasms the right side. it has been so bad that I was in bed for a week on muscle relaxers and narcotic pain killers.

I am quite shocked to read that there isn't many neuro doctors out there that are qualified in this field. I will be calling John Hopkins on Monday and Georgetown to get an appointment. I live in Arizona, but from previous illness I know to look beyond and go beyond to find the best in there field. Many internist, family doctors, and neurologist that aren't equipped with the knowledge do little good for us.

I have another rare disease that I had to go to Philadelphia to see someone there, as just being put on medication and side effects to those, etc...surgery is my very last option that I am willing to do...

I am on disability and was looking forward to finally going back to work...now this!!

Will keep you posted as I find out more and please keep me posted as to what you find out..

Thank you,

Alix:grouphug:

Tarlov cyst
 

Hiya,

I have a Sacral Tarlov cyst which causes extreme pain in my lower back and chronic sciatica all through my right leg to my foot. Having read a lot of literature, it appears that Tarlov's cysts can occur anywhere on the spine, although the occurance of pain- causing cysts is apparently rare !!, ... I do not think so. I have felt disabled for 3 yrs, have had to give up my job, and was mis-diagnosed two yrs ago !!! The two options open to me here in the UK is Narcotic based pain-relief which I don't want to start on, or relatively dodgy surgery , with severe risks. But to answer your ?, yes, they will cause sciatica dependent on which nerve root ends they are growing on.

Tarlov Cysts
 

I too was diagnosed back in early April with a large tarlov cyst and/or cysts. I have been to several neurosurgeons in my area and none can help but have been instructed to find a surgeon because of it's size (ya...that's all the help they could give me). After going to a pain management specialist, they put me on extended release Tramadol (Ultram) for the day to day pain and overall, it's working alright. I do have an appointment with a surgeon in Seattle tomorrow who has perfomed quite a few surgery's and am hopeful.

The pain management has been very helpful in getting through these last few months but I don't want to live with this pain for the rest of my life.

If anyone out there has had this surgery, I would love to hear your story.

Thanks!

Hi,
I have just joined and I did have the surgery. If you are interested in any info would you please let me know. thanks...kittycatdoglover

tarlov cysts surgery patient
 

Hello
I have had the surgery for the tarlov cysts and if anyone would like any info on the situation please let me know. I had to travel out of state and had the problems with insurance as well. Its very frustrating the lack of Doctors that can help us. I cant even find a Doctor in Mich that is willing to be my follow-up Doctor. If anyone knows of 1 in Michigan that is willing please let me know so that I dont have to keep traveling so far away. Thanks so much
kittycatdoglover

Info
 

Hi, I would love to know if the surgery was a success? Any negative affects? I also live in MI and am looking for someone to help me, I went threw 30 neurologist/neurosurgeons in the phone book and none know anything about it.
Thank you so much for your help, If I find someone ...I will let you know.
Thanks, Khris

Surgery 12/21/09
 

[QUOTE=kittycatdoglover;460319]Hello
I have had the surgery for the tarlov cysts and if anyone would like any info on the situation please let me know. I had to travel out of state and had the problems with insurance as well. Its very frustrating the lack of Doctors that can help us. I cant even find a Doctor in Mich that is willing to be my follow-up Doctor. If anyone knows of 1 in Michigan that is willing please let me know so that I dont have to keep traveling so far away. Thanks so much
kittycatdoglover[/QUOTE
I am now 4 months post surgery and have this pain I can't describe well and can't really tell if it is my tail bone or my rectum. It feels like nerve pain constant but at times worse than others. I am back at work and have been for almost a month. I also have sciatic pain on the left side only that goes to my knee and some times to my ankle. Doc (NS) they are going to want to run some test on the first pain but that the sciatic pain is not related to the surgery which I have a hard time believing since I had it before the surgery and it appeared related at that time. Any info you have about your recovery would help. Thanks Charlotte Clark

perineural cyst
 

It has been two years since you wrote about your Tarlov cyst. I have them too. I also live in Arizona. You had mentioned that you were unable to find a doctor that could help you in Arizona. Did you ever have any luck?